Topic Contents

Syringomyelia

National Organization for Rare Disorders, Inc.

ImportantIt is possible that the main title of the report Syringomyelia is not the name you expected.

Disorder Subdivisions

None

General Discussion

Summary

Syringomyelia is a condition characterized by a fluid-filled cavity or cyst known as a syrinx that forms within the spinal cord. Syringomyelia is a chronic condition and a syrinx can expand over time compressing or destroying the surrounding nerve tissue. A wide variety of symptoms can potentially be associated with syringomyelia depending upon the size and exact location of the syrinx. Common signs/symptoms include pain in the neck and shoulders, muscle weakness, pain and stiffness in the legs, numbness or decreased sensation especially to hot and cold, abnormal curvature of the spine (scoliosis), muscle contractions, and uncoordinated movements (ataxia). The majority of cases of syringomyelia are associated with a complex brain abnormality known as a Chiari malformation. Additional known causes of syringomyelia include tethered cord syndrome, meningitis (arachnoiditis), certain tumors of the spinal cord, and trauma. In some cases, no underlying cause can be identified (idiopathic).

Introduction

The terminology used in the medical literature to describe syringomyelia can be confusing. Syringomyelia is often associated with an abnormality of the craniovertebral junction, usually a Chiari malformation, and these cases may be referred to as congenital syringomyelia. Secondary syringomyelia refers to cases that have a known cause. The term primary syringomyelia has been used to refer to cases of unknown cause or to cases that occur because of specific known causes that damage the spinal cord. Posttraumatic syringomyelia refers to cases that result from trauma to the spinal cord (these cases are sometimes sub-classified as primary syringomyelia).

Some individuals have a condition related to syringomyelia known as hydro(syringo)myelia, which is characterized by abnormal widening of the central canal of the spinal cord (the normal small canal running through the center of the spinal cord). Some physicians use the terms syringomyelia or hydromyelia interchangeably. Hydromyelia may also be present in infants and young children with or without brain abnormalities, such as Chiari malformation type II. The fluid-filled cavities in cases of syringomyelia often do not connect to any other fluid-filled areas or spaces and occur more often in adults than children.

Supporting Organizations

American Syringomyelia & Chiari Alliance Project, Inc.

P.O. Box 1586

Longview, TX 75606-1586

Tel: (903)236-7079

Fax: (903)757-7456

Tel: (800)272-7282

Email: info@asap.org

Website: http://www.asap.org

Chiari &#038; Syringomyelia Foundation

29 Crest Loop

Melville, NY 11747

Tel: (718)966-2593

Website: http://www.CSFinfo.org

Christopher S. Burton Syringomyelia Foundation, Inc.

P.O. Box 100335

Fort Lauderdale, FL 33310-0335

Tel: (954)727-5137

Fax: (954)636-2409

Email: info@thesmfoundation.org

Website: http://www.thesmfoundation.org

Conquer Chiari

320 Osprey Court

Wexford, PA 15090

USA

Tel: (724)940-0116

Fax: (724)940-0172

Email: director@conquerchiari.org

Website: http://www.conquerchiari.org

Genetic and Rare Diseases (GARD) Information Center

PO Box 8126

Gaithersburg, MD 20898-8126

Tel: (301)251-4925

Fax: (301)251-4911

Tel: (888)205-2311

Website: http://rarediseases.info.nih.gov/GARD/

Hydrocephalus Association

4340 East West Highway Ste 950

Bethesda, MD 20814

USA

Tel: (301)202-3811

Fax: (301)202-3813

Tel: (888)598-3789

Email: info@hydroassoc.org

Website: http://www.hydroassoc.org

March of Dimes

1275 Mamaroneck Avenue

White Plains, NY 10605

Tel: (914)997-4488

Fax: (914)997-4763

Email: AskUs@marchofdimes.org or preguntas@nacersano.org

Website: http://www.marchofdimes.org and nacersano.org

NIH/National Institute of Neurological Disorders and Stroke

P.O. Box 5801

Bethesda, MD 20824

Tel: (301)496-5751

Fax: (301)402-2186

Tel: (800)352-9424

Website: http://www.ninds.nih.gov/

World Arnold Chiari Malformation Association

31 Newtown Woods Road

Newtown Square, PA 19073

Tel: (610)353-4737

Email: chiari-owner@yahoogroups.com

Website: http://www.wacma.com

Worldwide Syringomyelia & Chiari Task Force, Inc.

PO Box 491975

Lawrenceville, GA 30049

USA

Tel: 1-914-510-CURE (2873)

Email: wstfcure@wstfcure.org

Website: http://www.wstfcure.org

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report.

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

Last Updated: 10/30/2014Copyright 2014 National Organization for Rare Disorders, Inc.

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